I will attempt to capture some of the random thoughts that go through my head as I lay in bed. I do some of my best thinking there! I used to get up and record it all for work, but my MS legs decidedly do NOT like to get out of bed unless it's a 'peemergency' until it's time to get up. Just the way it is now, so I'll attempt to talk about some of the stuff that has kept me thinking at night. Not up all night thank you very much! Since the procedure I must say that I sleep sooo much better than I used to. I also think that the LDN (low dose naltrexone) helps in that area too. I don't know how endorphins help you sleep, but as most folks with MS know, I'm not going to ask too hard and go back to sleeping like crap. The therapeutic power of a good nights' sleep can not be overstated. Sleep rocks, simple as that.
As most of you who read this know, I always try to stave off things that I know are around the corners and lurking in the shadows of our lives. Things like depression, non-specific anger at the world (the grumpy cripple syndrome!), and other things that you deal with when you're an incurable, progressive disease patient. I think the great impetus behind me wanting to be so proactive about all this is twofold. 1 - because that's the way I am, and 2 - because I'm scared to death of falling into a mental trap and you all know I've professed to be one of those people who deal with major adversity with grace. It probably comes down to the fact that I don't want to ever have to try and work my way out of a hole emotionally; I've got enough shit to deal with! So yes my idol is still Christopher Reeve. If that sum'bitch could keep a smile on his face, then damnit so can I. I mean it's not like he was Superman or anything...wait, what?
So it comes down to thinking about my home. There have been many times in the past, and I'm sure it's this way for most people, where you attach a feeling, or emotional mindset, to a location. You had a great trip to Florida, you love the shit out of Florida. You had a crap trip to Gatlinburg, you hate Gatlinburg. Even though places themselves don't emote, I think we attach a mood or mindset to a place based on the energy we give it while we are 'in it'. So basically I'm scared to death of attaching a negative mindset to my home since this is where my MS in its' entirety has played out. That would really suck if I had that attachment to my house. I can't imagine it would be easy to stave of the depression monkeys if I had a negative feeling being in my house. Kind of like a song that reminds you of a girl you screwed up with or something like that. You never like that song again and the emotional memory of that song comes up every time you hear it. Well for starters, I'd have to look at everything that way since MS is simply my constant companion now so it's feelings 'stain' everything.
My house is my haven and I won't let it get that way. I know many people who are stuck in their house who hate it for that very reason; because they are stuck in it like an aquarium and all they can do is look out the windows and watch life happen. Not there yet, don't want to go there until/unless I have to and I have to handle that like a champ too. There was just way too much love that went into the purchase, the fixing up of, and everything that surrounds this house. Me and my wife are still very in love after all this time and my daughter was raised here and everything. I love my home. I plan on always loving it for that reason and I can't let the fact that life gave me a 2, 3, 4, 5, 7 straight ruin that; how big of a pussy would I be? I mean I have MS, that is my life now. Some lucky people sail through life with full physical health. More power to 'em, I'm jealous. However, you have to live with what you have; period. This is simply my life now. Many people choose to not accept their lot, and those are the people who just don't end up very happy. And you don't have to be sick to screw that up. I know many fully healthy, miserable people. 'If only I could get a large sum of money', 'if only I could have married her instead of her', and it goes on ad infinitum. It comes down to self perception really. And that's the rub to me.
I need to always be cognizant of 'keeping my power'. I'm still the person I was before I got MS. I'm still in here. It ends up being so hard as you get in a rut of what life has taken away from you. But it gives and takes much less and much more to lots of people every single day. That is life. We are all not the same. Would we even expect it to be that way? Some people have to deal with abuse their whole lives. Some people have to deal with sickness. Some people with success and some with failure. It's all just simply relative but keeping that in mind and in the forefront is the challenge. Since there is nothing any of us can do, right now-fingers crossed, about MS, then getting apoplectic about it isn't going to do anything but hurt ourselves. I mean the energy spent frustrated and pissed simply goes nowhere. So why expend it? So my new thing is to only expend energy on things I can do something about. Lamenting what could be is like daydreaming about winning the Power Ball. It just 'ain't gonna happen, so why not just "live"? I CAN'T make the best out of something I don't have, so I have to make the best out of what I DO have. Yes, that sucks, but compared to what? No one guaranteed that we'd all have nothing but good luck. You're kidding yourself if you think your anger at whomever for your lot in life is going to do anything but simply make you miserable.
I mean it's easy to get pissed and truthfully you do have to beat the shit out of something, inanimate please, every once in a while just to get the stress out. I recommend a tree and a ball bat; seriously. But constant lamentation of how you were screwed does nothing save screw you some more. It's ALL self imposed; our misery that is. We give it the power. It is literally nothing until we give it energy. It's simply a harder dynamic to deal with when you come from a place where you used to have your health. Much like becoming blind I imagine would be much harder to deal with than being born blind. And I think that's what it comes down to. Something was taken from us. But since it wasn't by anyone in particular, there's no one to blame and no one to sue for the damages (please don't get me started on trial lawyers). So our hand wringing and angst, while justified, is simply a waste of energy that we could have probably used to accomplish something. And what makes us feel good about ourselves? Accomplishing things. So even though I'll probably only be able to rip out one sheet of drywall per day, I AM going to get my back room remodeled. It may take a year and there will be plenty that I just simply won't be able to do, but I will be accomplishing something. And I can always walk my wife and daughter through the things I can't physically do. That's the other thing I wanted to talk about. Raising kids.
I am actually enjoying my teenage daughter. I know, I know, what? And yes she's only 15 and I know we haven't hit the 'sweet spot' of the teen aged years yet, but I am nonetheless and I know even t 15 they can be a giant pain in the ass from watching my contemporaries. However, my daughter has the chance to be 'raised right'. Partly because I think I know what right is, but also partly because she is shaping up to be one of those kids that has a handicapped parent that has her priorities straight. Raising her in parochial school makes the priority setting easier, but we all know it's at home where you do 'the most damage'. I send my daughter to a parochial school not only for the moral compass they help provide, but also because they don't have to play the politically correct thing. I abhor political correctness in all its' forms; I hate it and won't have my daughter go to a school that will expel her for bringing in a rubber tipped dart gun in recognition of their 'zero tolerance' policy. OK, I'll stop now on that. She has to do so many things for me that I hate it. But I also love the character it is building in her. My favorite Nietzche quote is about the difference in being raised in an environment where she has to do things and one where she does not. It is "God is more interested in our character than our comfort". That speaks. I have many friends who have the most difficult time asking their teens anything that makes them uncomfortable. They don't ever want them to be mad at them. What? Did our parents give two shits about whether what they were telling us made us 'like' them? No they didn't, and yet a grand majority of us still love our parents dearly. How did that happen? lol!
Newsflash: Your teen is going to 'hate' you at times whether you make them tow the line and work hard or whether you indulge them. If you call me a liar for that statement, you deserve what you get! I don't know how many of my friends are amazed that my daughter mows the lawn. I've been told many times "I wish I could get so and so to do that, how'd you do it?". The quick answer is we made her do it. And that's the truth. Take away stuff until they do it. It's not hard. How did YOUR parents make you do it? I do understand that my situation is different, but she was doing it when I was still able to. But the high level of self sufficiency and the like that she is showing is making me a very proud dad. And as/if I go down the disability scale further, the one positive is what it will teach my daughter about how to be. No, I don't think "MS is the best thing that's ever happened to me". People who say shit like that I'd like to punch. They don't have real MS yet. I'd give back every lesson that MS has 'taught' me about what I was doing right and wrong back for my health. I really liked myself before, faults and all. And I'm starting to like myself again.
Things are so different. And I think that's as big a part of it as anything. You undergo sea change like you would not if you had your health. So you do have to work on your self perception. The things you judged yourself on before no longer apply and many of the things that used to make up your self image are gone. But I do believe it's more important than ever to understand who you are now. You aren't just the 'disabled guy'. That is not how you define someone. It may be how you describe them, but it's not who they are. And if it is, that person is miserable. Re-establishing the self worth 'things' and taking power back in your relationships is so important to self worth. It would be sooo easy to just give in and relegate yourself to the sidelines. "Life is over, I'll just watch now" doesn't get it. Yes, my life of accomplishing what I set out to do at the age of 18 is over, most assuredly. Now a great deal of my focus is on doing what I can to make sure my daughter gets it right.
I can see why getting an MS diagnosis would be damn near impossible at a very young age. It is a disease that affects YOU. So at 18 all my focus WAS on me. I've often spoke of how I accomplished a great deal by the age of 40. It's not like I'm totally ok with giving so much stuff up. But I'm much more OK knowing that I've achieved professional success, loved and laughed as much as I could and lots of stuff like that. In other words my bucket list isn't a mile long; there's no burning hole in my being of something left undone. My focus now is more on others and it really feels kind of good truthfully. Is that why I have so many friends who have very strong faith that are so happy? Maybe it's because they've always lived that way? Who knows. No matter when you get that memo, it's never too late. Helping others, no matter what age you are, always feels better than being self focused.
So 2010 is hopefully the big year that I flip my eyeballs 180 degrees and look out and not in. It is now my job to try and make sure my kid gets that memo before the age of 45. The world is changing so much, but what makes one happy is still the same. It's not money, it's not stuff, it's love and relationships and helping one another out, even if it's your family. Did I learn that too late? It's never too late.
And lastly, I need some thoughts and prayers. Similar to how I asked for the same to have my jugular veins actually BE screwed up. I need the same thing for my back. About 9 months ago I had described an issue with my sciatic nerve that I thought was peripheral in nature. I thought this because I could change the degree of numbness and pain by changing sleeping positions and sitting positions; in a big way. Well the EMG said it was central and, like everything else, it just got wrote off to MS. That's a pisser about this disease. Many doctors won't take you seriously about anything else since you have MS and it can cause so much crap. Well the sharp pains and that started coming back so my GP had me get an MRI. Guess what? lateral recess tear at L5-S1. Now I have no idea what the hell that means. I hope it means that something in that area of my back is causing a pinched nerve or abraded nerve. So here's the nutjob HOPING for back surgery. Not nuts because it means it could potentially be corrected and then I could get some strength back in my left leg. If not, my left leg is going to be the biggie in compromising my mobility. I'm losing muscle tone and size and everything, so here's hoping it's something in my back that can be fixed. If not, then I'm progressing again, albeit much slower than I was before my stents. So yea, c'mon pinched nerve!